I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Wednesday, September 2, 2015

Bald and isolated, but never alone

Cancer is so isolating.

We lived in the hospital for many months, often confined to a single room. Three weeks ago, only 21 days after transplant, we were finally, and most gratefully, discharged. While we are incredibly blessed to be home, Brent is restricted from attending school for some time. The geography may be far better, but the isolation continues.

This morning I logged into Facebook and the first thing that I saw was a video from a St. Baldrick's event in March, when we first learned that Brent would need a bone marrow transplant. The nurses from Rainbow Babies and Children's Hospital had banded together. Thirteen of them shaved their heads in honor of their patients. They held hands, draped in barber's capes, in an effort to raise both awareness and much needed research dollars. That was nearly six months ago.

Over the ensuing months, we watched these same nurses work tirelessly to care for families affected by pediatric cancer. While some might argue that caring for tiny oncology patients is their chosen occupation, they do many meaningful things that are not included in the job description. It is true that these nurses are paid to care for pediatric cancer patients, but they also care about these kids.

In solidarity with their young charges, the nurses going bald that day was a visible manifestation of something that I know with absolute certainty: These caregivers do no punch out at the end of their shift and walk away from the things that they see. They carry our burdens all day long, and then they quietly carry them home.

I am grateful that my son, after months spent in the hospital, is home. I am glad that his current concern centers on when will his hair grow back, because he is anxious to shed this latest cancer identity and a bald head tags him as a cancer patient. I measured up one of the nurse's hair in clinic yesterday while we were there, and am pretty confident that Brent will not be making an appointment for a haircut any time soon.

It is difficult sometimes, when strangers ask my son if he has cancer. (And yes, they frequently do) It pains me far more to hear these inquiries, than when the subject of cancer was just stumbled upon. A few years ago, seeing crutches, folks would ask him if he had a sports injury. Brent would respond openly and truthfully during 'elevator small talk,' and indicate that he had no hip because of cancer. But now, when strangers ask him directly, "Do you have cancer?" he is reminded that he looks sick, in contrast to looking healthy, but perhaps just injured. We all understand that the difference in the conversation is primarily driven by his lack of hair.

Which brings me back to the nurses, who voluntarily took on this identity. I imagine that they fielded many similar inquiries, particularly in the earlier, and much colder months. Prior to the St. Baldricks event, they might have changed out of scrubs, and escaped their outward association with the hospital during their off hours. But there is no escaping the bald head, the stares nor the open curiosity you witness as people try to figure out your story from your appearance. I don't have to explain this social phenomena, at least, to these beautiful shavees.

We have been so blessed in our 'adventure.' (I am quite weary of the phrase 'cancer journey' at this point). Because even amid our forced isolation, we have had so many reach out and reassure us that we are not forgotten. The kind words, prayers, gifts and time offered to my family have been a meaningful reminder, just like the bald nurses who came in to our room at all hours of the day and night: We may be isolated, but we are not alone.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.